Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

B12 Deficiency Anemia?

HopefulMama23

Recommended Posts

HopefulMama23 Explorer
HopefulMama23
Posted

Hi all- I have been pouring over my test results, determined to figure out what has caused my latest bouts of symptoms.

My history:

After my 3rd child was born, I developed chronic D, lost a lot of weight, became very depressed and tired, and lost a TON of hair. I was tested for celiacs via blood test and the result was negative, but I have it in my family, so I opted to go on a gluten-free diet regardless. The diet helped, and things SLOWLY got better, with the fatigue the last thing to go.

But- recently I have had the seemingly opposite reaction, anxiety, rapid heartbeat, brain fog, insomnia, diarrhea, weight loss and further hair loss. I was thinking thyroid, so I pulled out my test results from 4 months ago to re-look at everything with fresh eyes.

In those results, my Free T4, T3, and TSH are all within "normal", but are all at absolute bottom of normal scale.

Here is what caught my attention- my MCH and MCV are both high- off the recommended scale. I looked that up and apparently it can be indicitive of a B12 deficiency. I looked THAT up- and the symptoms match mine exactly.

It also looks like a B12 deficiency can be pretty common with celiac's.

Anyone have any experience with this? Any advice? Any idea why 5 months into my gluten-free diet these symptoms would surface?

The funny thing is- I ran right out last night and bought a B12 supplement and took that last night with a Folic acid supplement (this is what I read to do). Maybe it was in my head, but I swear I feel better today.

Am I crazy?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sb2178 Enthusiast
sb2178
Posted

B12 deficiency typically takes a long time to surface-- your liver stores quite a lot of it. Vegans, for example, can go 10 years (often) before symptoms develop. Elderly folks whose stomachs stop producing enough acid to break it off the proteins it's connected to also often don't develop symptoms for 10 to 15 years. It's probably something that had been developing for quite a long time, and just coincided with the gluten-free diet.

In other suggestions, I'd check with your MD to see if they have previous bloodwork on file and can review it. One of those is genetic... don't remember which... so they can see how much it changed. Also, you may need shots if your intestines are not absorbing it. Might be a good idea to follow up on those symptoms too, just in case it is a thyroid thing that shifted enough to make it recognizable in bloodwork.

Liver, by the way, is an excellent source of B12.

laura4669 Apprentice
laura4669
Posted

You might also check into other food intolerances, which can cause some of your most recent symptoms. I found out I was intolerant to most other grains, as well as dairy, potatoes and chocolate!

I also take B12, however, I need to take it sublingually since I don't seem to absorb it through my gut. As the previous poster suggested, you might check into whether you need something other than the capsules.

Judy3 Contributor
Judy3
Posted

You might also check into other food intolerances, which can cause some of your most recent symptoms. I found out I was intolerant to most other grains, as well as dairy, potatoes and chocolate!

I also take B12, however, I need to take it sublingually since I don't seem to absorb it through my gut. As the previous poster suggested, you might check into whether you need something other than the capsules.

I do the same sublingual B12 every morning. If I forget it, I get the sores on the corners of my mouth by the end of the day :(

SoyBoy Rookie
SoyBoy
Posted

With a B12 deficiency, it takes very little time to start feeling the effects of supplementation. So, it is possible that it is not

Debbie B in MD Explorer
Debbie B in MD
Posted

So what should your B12 be? I don't have my report right in from of me, but I know mine was well at the low end of a very wide range. I know there is a reference range which I did fall into, but what about optimal??

mushroom Proficient
mushroom
Posted

I personally found that my optimal is mid-range - mine was at the lowest end of normal, my MCV had been high for years with no alarm bells rung for doc, and my folate was also super low but still "normal". I felt improvement right away with B12 shots (am allergic to something in the sublinguals) and a B complex, along with a total 800 mg folate.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


SoyBoy Rookie
SoyBoy
Posted

So what should your B12 be? I don't have my report right in from of me, but I know mine was well at the low end of a very wide range. I know there is a reference range which I did fall into, but what about optimal??

Maybe not the best site to reference, but here you go...

Open Original Shared Link

B-12 lab test: Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. You are looking for an optimal B12 lab result at the top of the range. It is NOT optimal to simply be

HopefulMama23 Explorer
HopefulMama23
Posted
  • Author

So I took my first B12 supplement Monday night before bed- and Tuesday was the best day I've had in a while- more energy, normal hair loss (not coming out like crazy like it has been doing), less anxiety, no trouble falling asleep, KP on arms was better. I thought I had found my answer!!

BUT- I took it last night before bed also and this morning was just as bad if not worse as I was before- hair loss in clumps, anxiety, fatigue, KP is back.

My test results do seem to show an issue- so I will continue to take it. Any thoughts on why I had a good day and then a bad day again? Is this just to torture me every time I seem to find hope?

Jestgar Rising Star
Jestgar
Posted

I take a B complex just for an energy boost (instead of coffee in the afternoon). It's one of those vitamins that it's hard to overdose on.

mommida Enthusiast
mommida
Posted

It might actually be Pernicious Anemia, which is associated with Celiac. The damaged gut lining does not have the intrinsic factor to process B12.

Find out your actual test results on your test and the ranges of "normal".

angel9165 Newbie
angel9165
Posted

When diagnosed last fall w/ Celiac, my GI doc ordered B12 shots for me every other week for 6 months and now I go monthly. As far as my primary physician is concerned, this will be a forever thing for me...monthly B12 shots. Oddly, it was never mentioned that I should take a supplement. For me, I'd rather do the shot. :)

modiddly16 Enthusiast
modiddly16
Posted

I get b12 shots and have been for the last 5 months, I've been a celiac for over 7 years and it took a long time for it to finally get noticed, based on my symptoms I was still having a lot of celiac seeming reactions, but following the strict diet. In the 5 months, I've seen a boost in my energy and less pep in my step to the bathroom :) . "Normal" levels are between 300-900 and they like you to be somewhere in the middle. My level was 150, which my doctor called freakishly low. Even after 5 months of shots, I'm still only to 250, so my body is taking a bit longer!

Chiana Apprentice
Chiana
Posted

The current recommended guidelines are 2500 mcg per day, if you suffer from pernicious anemia and take oral supplements. Personally, I think that the shot once a month is much much more effective than the daily doses...I've been getting them for years now.

modiddly16 Enthusiast
modiddly16
Posted

scratch that! apparently I'm at 209...haha the Dr. just called.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,946
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.